We have a choice

Thursday was unreal. I was on the bus going South on the island to fetch the ferry for my cancer check up. I gave myself extra time to enjoy the day and have lunch before my appointment time. We came up on the point of the island where it truly is the only road. Right in front of us is a head on collision and the cars are bouncing back apart. A 20 year old female hits a 72 and 90 year old couple and their dog. The 20 year old didn't make it. It was horrible watching this play out. I end up asking a stranger for a ride back to my work where I had left my car, after knowing it was gonna be another 3 hours before the road opened. I get to my car and head north off the island to head south on I-5 to get to my appointment. My GPS says I will be there 15 min early. Then I-5 comes to a stand still. I look up and see 2 helicopters, then I look at the empty north bound lanes and a fire truck goes flying by going south on the north side. I wonder if we have another fire. Come up on another horrible accident. Counted 7 cars....turns out a 19 year got distracted by her dog in the car, was going south but crossed the medium into north bound traffic head on. She survived but killed a man. 

I ended up arriving at my appointment with only 1 minute to spare, at this point I had only had a coffee and a pop tart to eat all day. But I survived the drive. My appointment turned out like I had already figured out from my lab work. My tumor markers are elevated....so once again I jump on the crazy ride....this is getting worse then my first ride on the colloses at magic mountain that I was dragged on to. But in this instance I have a choice of getting on the ride or just watching from the sidelines. After my adventure just to get to the appointment my view has changed. I am still breathing, and I choose to just keep living happy. I keep getting my pills and food stuck at the bottom of my throat. We know there's a new mass there....and we know I have a confirmed cancer mass on the right side of my neck, that failed treatment.  So the next step is an ultrasound to check these two and see if there's any more. I am at the point where another surgery is so dangerous. Even though my surgeon has been called a cow boy. External beam radiation would make another surgery almost impossible if needed, and I-131 radiation would put me at serious risk for lymphoma and leukemia. So all these options are in my back pocket for emergency use only. So basically I am in a pickle. I am starting up on more meds to see if the blockage is from a silent acid reflux before having another tube shoved down my throat. And yet the doc is still concerned about the lung spots too. So this month once insurance approves I will have an ultrasound. In December in will have another CT of my lungs. But we can't do anything until the masses grow bigger then 10 mm. So basically at the end of the day I am choosing to just be living with cancer and ignore it to the best of my ability. Because clearly at this 2 year point since my last surgery I am still in the same place of the unknown. But isn't everyone's life unknown? Makes me really no different. I ended my day with a little retail therapy, time to myself and arrived home at 9 pm. Just really thankful and grateful for what life has brought me. Now to have another motorcycle adventure and some fun today. 

Sent from my Verizon Wireless 4G LTE smartphone

Finally after 3 weeks of battle

It has been an insurance battle I have never seen....and I have fought with insurance for over 16 years now for work. Just got the call.....my sleep study is finally scheduled for September 20th. Could be earlier if someone cancels. But just the simple act of having it scheduled, makes a difference in my head. We're going down the list of trying to figure out what is wrong with me. Sleep Apnea would be a welcome blessing vs. anything else. But like everything in my crazy medical journey.....I can't seem to fit into the "normal box". I am getting so tired of this constant fight. There are no plans at this time for what we are going to do about the cancer mass in my neck. That really leaves so many questions that I have no answers for. This week while being off of work I am trying my best to reroute my thinking.....for some reason God has not given me the miracle of clean health. I know there's still so much more I need to learn. I have prayed my whole journey for His will, not mine. Not once have I actually asked Him to cure me. At times I don't feel like I deserve His touch. Why do I doubt His gift is for all of us? I am human, full of doubt of myself, like I have to earn His healing touch. How has society taught us we're never good enough? All those Bible stories growing up play in my head. God is Love. I have prayed for God to use my journey to help others. So does that mean that God has answered my prayers? Working on the depths of my soul and finding peace, joy & love along the way. ♡

Answers......my plan not His...not exactly....His plan, not mine.

What a week! I am so impressed with my son's track season. He needed that in his life! Great coaches, great teammates & great competition. Was so wonderful to have 8 weeks of positive flood our lives.

I am currently on my way down the island on the bus, catching the ferry and then getting picked up on the motorcycle from Ken. I am not the best of company right now, as tears keep escaping down my cheeks. I don't like others seeing that side. So I am actually thankful for this time to process alone. Head phones on and letting music flood my heart.

On Monday my let's check and see if this treatment worked ultrasound happened, as well as the let's peekaboo at those lung spots, and the let's check your blood and read your life test. So on Tuesday, I gathered all of the results to take them today to my follow up. So you know I read them....how could I not? Definitely deserve some kind of life degree....lol I am blessed to share my office with some amazing oncologist, whom are not officially my doctors, but have helped me process this time for sure. On Tuesday, our doc made me laugh and said I should go back to school and become a doctor because my understanding is there. I hope I understand some of this after a 20 year battle. What I read is my tumor where the abliation was done didn't shrink, it shifted in size. Guess it tried to run but was blocked. I also have a new mass on near my vocal cord. My Lung spot has grown. As well as my labs are elevated.
Yesterday I received a copy of the letter my doctor wrote on my behalf for my appeal. Right now they have made $277 my responsibility. But I did an appeal on my own behalf. Praying it worked. However, in the letter my diagnose has changed. But seeing it in print from my doctor hit hard. I am no longer categorized as papillary thyroid cancer. Which deep down I knew but seeing it from him, hit me hard. I am now metastatic papillary thyroid cancer. That M word hurts more then the C word. I can't really put it into words. Other then it SUCKS! When ever cancer leaves its primary it becomes metastatic.  However all this time I had my brain convinced that I just had leftover thyroid tissue in there. Brain games at its finest.

If I had to guess what today's appointment will hold. I would say maybe another biopsy on the new mass. But the new treatment failed....maybe the oral chemo pill.....we're about to find out if I am right. What I do know is I am certain I will refuse radiation or even external beam radiation. Not worth the doors both of those would totally close for me.

But first a motorcycle ride and a lunch picnic with my honey.

Doctor appointment done....

So here's what the plan is....referral to a pulmonary specialist. Pulmonary function testing ahead. And having a lung doc add his input on these lung spots. Pending those results.....we will meet again and discuss oral chemo pills. As far as my neck tumor, we will not be doing any more abliation treatments. The outcome wasn't what we had hoped for. We will keep the neck mass in a hold pattern until the lungs are figured out. Praying the neck injection scarred it just enough to help it from growing.

It was mighty hard to admit symptoms I have been trying to ignore. And listening to my husband rat me out to the doc. Ken's words "She's not functioning on all cylinders. When she doesn't seem right I take over driving. She's not sleeping good, like she used to."

I thought I was superwoman and could just do it all. Reality is I can't. So now we start the referral process and insurance authorization. I am going to do my very best to just live in the moment. But I will be honest and say this is not an easy one.

So we end the day with no new answers, but the start of a plan.

It's almost time

It's finally time to find out if my treatment worked or not. On Monday I will be having an ultrasound on my neck, blood work, as well as a CT of my lungs and their polkadots. The neck ultrasound will be measuring my known cancer mass. The goal was that the alcohol shrunk it's size. While it doesn't make it fully go away, if we shrunk the slow growing cancer we will repeat ablation in 2 years. If it shrunk only a little then we inject again soon. If it didn't shrink at all, then we talk surgery again. As far as my lungs, if the masses have grown in the last 2 years...well honestly I don't know what the plan is with them anymore. 2 years ago they talked about external beam radiation. I would assume that if they have only grown a little that we would just keep watching them. The rate of growth vs the exposure to treatment... So yeah let's not go there until we have to. How am I really doing? I try and put on a mask every day. I don't really know how well I have successfully pulled off my disguise. My body is screaming with exhaustion. But I have mentally made the choice to just keep swimming. One step at a time. I have really enjoyed working less and sitting in the stands cheering on my son....what perfect timing and excitement. So my plan is to piggyback on to his winnings this Monday...his goal is to win the mile again, and mine is to win my scans. My selfish prayer is that my energy comes back soon...but my heart prayer is still that God's will be done and that I keep my brain from the yucky train all weekend long. Something shifts once you actual have your tests scheduled. Which just happened yesterday. Tonight is Relay for Life and this year will be extra special as my Mom, Ken, Mary and Danny will all be there with me. Such an amazing celebration that I am looking forward to. There's something pretty amazing being a fighter, survivor and embracing patients of present and past, and extra special hugs when you come around the corner and embrace a family member of patients we lost too soon. Oh my heart is so warm and fuzzy. ♡

Heading to get my ruby slippers...

Saying someone can't be sad because someone else may have it worse is just like saying someone can't be happy because someone else might have it better.

This past month I have let cancer win. It felt at times that I wasn't allowed to embrace my own journey. I have watched others fighting, dying and getting diagnosed these past 2 months with worse cancers then my "good cancer". Is there really such a thing as a "good cancer"?  Those words have taken a giant toll on me.  For 20 years now I have fought to push thru thyroid fog brain, staying positive and full of life, fighting being exhausted and wanting to always take a nap, and just being cold. That is my norm. But we all have issues and I choose to not let it keep me captive. I have been really short fused and grouchy. I apologize for being snappy. But the quote above really hit me. It's ok that I am sad....and it's ok that I embrace my fears. Because I have to process my journey too. Having a scheduled plan has always been my turning point. I can best describe it as that moment after a storm when the clouds open and the sun starts shinning. I am nervous as there's so little documentation on my procedure ahead. But I am willing to try it because this could be a giant change if it's successful in the world of treating thyroid cancer. Only one day off of work. And if for any reason it doesn't work, there's always surgery. Really looking forward and praying I can watch the screen as the nasty beast melts away just like the wicked witch. Gonna get some ruby slippers! Sparkle time!  #strengthhopelove

Numb & Sorry to take you on this ugly adventure again.

I am numb and frankly mad! As I watch my family around me breaking worse then I have seen yet. We were just getting to the point of starting to actually put our dreams on paper for the future. How do you act like everything is normal and ok? While I knew the doctor thought my cancer was back, hearing it actually confirmed had to be one of the worst moments yet. It doesn't get easier time after time.....it gets worse and you wonder if this will ever go away. It feels like a monster is smashing my parade. I have learned a few things in the past few days....the new chemo pill won't ever cure me. It only slows the cancer down with all the nasty chemo side affects. So they lied when they said thyroid cancer is the good cancer to get. Yes it's slow growing, but that slow growing is what makes the chemo not kill it. Right now I am in the waiting pattern for a referral & insurance approval to find out if I am a candidate for alcohol ablation therapy. The ground has swirled up into dust around me and I am having a hard time processing. I am exhausted, my stomach is nauseous, after a few bites I am done eating....trying to push thru. Getting lost in work to try and keep my mind busy. Holding tight onto all of you right now. Every sweet word, hug & laughter really makes a difference. Thank you! ♡

My mother n law will be in the hospital for a bit....today she said she felt like she was on a vacation. Pampered and a beautiful view to boot and a whole ton of attention from multiple phone calls from her family. She is still going thru more testing. Ken stopped on his way home from work tonight to see her. She was weak but smiling.

It's odd to look backwards over these last 4 years since moving to Whidbey....life after the military has definitely not been boring. Is it wrong to pray for some boring times ahead?

Putting my battle gear back on.

Wow in the last two weeks I first heard no surgery,  no cancer. Then yesterday, I hear "Oh no, let's talk about treatment.  Dawnelle, you know this is your new normal and we'll fight it for the rest of your life spot by spot." What the heck just happened???? Yesterday I went in to my endocrinologist and with me I took all my images, reports & labs. And I told my doctor I was confused and that it didn't all add up. He did another ultrasound then and there on the large mass that I had already been told was an infection or clogged saliva gland. He agreed, he went to put the wand away and I spoke up and said what about the smaller one on the other side that had the blood flow to it (those rainbows I saw last month that made me more nervous). (Side note: infections don't have blood flow like tumors do. Blood flow is what feeds the beast.) So he scanned the other side. He was training a student yesterday as well so he was talking thru the whole procedure as a teacher too. Next thing I hear as I could no longer see the screen from my position was, "oh no, let's go talk about treatment." He sat me down (yes, I was alone again.  Ken and I made that choice because we thought it was just a normal follow up. We had just been told I was clear 2 weeks prior.). He then talked about the fact I had already had 4 neck surgeries and we needed to try something less evasive. Dawnelle you know deep down this is how the rest of your life will be. We will fight it one spot at a time. First step is a biopsy to confirm his thoughts based on shape he believes the cancer beast is present. A neck biopsy to me is worse then surgery.  It hurts so bad. They put a needle into the mass and basically go up and down multiple times to get some out to test. Usually in 4 different spots of the mass. YUCK! My doctor will be performing this procedure on my son's birthday,  February 12th. It was his first opening and Danny will be in school anyways.  :) Ken will be going with me. Pending results & insurance approval he wants to do ablation therapy. Which is where they go in with imaging and place a needle directly into the mass, inject some kind of alcohol liquid that will burn it. Go back a few days/weeks later image again, inject again until it's gone. Side effect: if the liquid leaks out of the mass I will have a horrible burn on the inside of my body. Thankful how far studies have come and for options. Another option is a chemo pill, but because of side effects he doesn't want to go there yet. And we all know radiation is out of the question. How did I get 2 different answers?  Well a CT doesn't show the same as an ultrasound.  But I also never asked the surgeon about the other spot. Down side of multiple facilities doing testing.  We were focused on the big mass we could all see from the outside.  Hopefully this answers all the questions.  Now how is my head & heart? I am holding on tight to the doctors words of him saying it's not an aggressive cancer. I am lacing my boxing gloves up again and tattooing a smile back on my face. Yes it sucks but my attitude is the only thing in my control, clearly.  Thank you for loving me and riding this roller-coaster nuttiness with me. Good grief Charlie Brown!!!